Any Ritixumab successes?

[crackers]

way to go sangye.
john

[Luce]

Yay Sangye, fingers crossed!

[Doug]

...fingers crossed for sure- what good news, though!+6

[Sangye]

I just got back from JH. It's so reassuring to have a true specialist in this disease! The plan is to do ritux infusions-- once a week for 4 wks-- and stay on the ctx and 4 mg pred for the whole month. (He normally doesn't use rtx and ctx together, but the rtx takes a month to kick in and my Wegs is too active to leave it alone.)

I asked what happens after that, as in more rtx in 6 months, etc.... He said there's a good chance this is all I will need to put it into a solid remission, and as the next few months roll by we'll see if I can go back on higher doses of Cellcept or maybe stay off all drugs to maintain remission. As far as tolerating rtx, he's never had a single patient experience a bad reaction. He also said my case is very similar to another patient of his (ie, type/extent of involvement and refractory to ctx) and she has done great with rtx. Our conversation made me feel even more hopeful.

He explained why the ctx doesn't work for me. Even 150 mg (well below my weight-adjusted dose) wipes out my white blood cells more than it should but doesn't get the Wegs symptoms under control enough. So all it does is weaken me and do chemo-damage. He said I should never use ctx again and that my first docs never should have kept me on it for so long when it was obviously killing me. (I was on it about 7-8 months)

We have to do 125 mg IV pred at the time of each infusion to prevent allergic reaction. It's a bit nerve-wracking, because that can worsen my intracranial pressure problem. He consulted with the pseudotumor team at JH and they feel it will be okay. We'll just have to see what happens.

This last part was interesting. Those of you on pred know that our docs think 5 mg or below is nothing--certainly not enough to help, and you can easily get off of it. They always say 5 mg is "what the body naturally makes," so it's nothing. Dr Seo said that's not true and that one month after rtx begins, I can start weaning down the 4 mg daily very slowly. He said there's a big difference between 4 and 5 mg and that getting off the last 5 mg is the hardest on patients. My old rheumys used to ridicule me for all that, and here is one of the world's experts on Wegs saying "It's true."

So all in all, it was a great visit. I'm hoping to start rtx by next Tuesday at the latest.

[crackers]

so pleased for you sangye.btw that bit about about the last 5mg of pred is good to know.thanks.
john

[Sangye]

Holistic docs know 5 mg isn't "nothing." If you give that to a healthy person they will notice it!

My doc also referred to rtx as one of several "steroid-sparing" drugs, meaning it works so well you don't have to stay on pred. Cellcept is one. I never needed pred while I took it, either.

[Cindy M]

Sorry I haven't been on much lately. I have had 2 IV injections for Rituxan. I have been feeling a bit better at time but also have been very busy so then I am exhausted. I know this is a bit off topic, but I hope it is because of the rituxan that I am feeling better. I had mentioned before that I was thinking of selling my house and moving into a smaller place. Well I went ahead with it. I spent about 2 weeks getting rid of clutter and cleaning, (after being sick for the last 10 months it's amazing how quickly things pile up) I listed my house on a monday and by that saturday I was made an offer, accepted it so now I am just waiting to see if there financing will go through and for the there house inspection to be completed. The only problem now is that the place I am looking to move into is not available until either Dec 15 of Jan 20. I have until December 20th to move out of my place so it might be a bit of a problem if I have to go into January. I can stay with my sister until the duplex is ready but then I will have to put my stuff into storage.

[Sangye]

Moving is exhausting. I had to move out of my house when I was still on oxygen and incredibly weak. I also closed my chiropractic office at the same time. My friends swooped in and packed everything in 2 or 3 days and got me out of there. I still had to oversee everything and make all the arrangements while handling all my regular bills, doctor appointments, etc.... Three months later I moved again, into an even smaller place.

And 8 months after that, I moved cross-country to Maryland. That was the hardest. The planning was incredible, not to mention selling almost everything I had. And moving out of state required a lot of work notifying patients, etc....

I had to drive my car with 2 dogs and a bird. I was so worried about my bird being in a car for a week. I had to have all my new docs here lined up so I wouldn't have a lapse in care. I hadn't been able to find a place to live, so I stayed in a hotel for a week once I arrived. That meant packing up my car with all the animals every day and driving around in a big city. At night, I'd have to unpack all of us and go back in the motel. I was in pretty sorry shape the whole time, but you do what you gotta do! I'm exhausted just remembering it all!

I've gone from a 3 bedroom house with garage and a downtown office, to a 1-room basement plus a small storage unit. In the end, I'm so glad I downsized this much.

[Jack]

If I did not have the support of my family (and that wears a bit thin on some days ) I would have to do the same. In fact, I would probably need to bring in help to get by.

[Cindy M]

Boy Sangye, here I am feeling sorry for myself because of the storage thing, I can't even imagine what you went through. I do have quite a bit of help from family and friends, but it is very stressful and scary. I keep wondering if the place I chose is the right one for me. One moment I am excited and the next I am worried that it might not be the right one.